By Marvin Ross
I decided to write this after the feedback from an event in Richmond Hill, Ontario put on by Home on the Hill, an organization which serves families and loved ones affected by serious mental illness. On May 10, this agency north of Toronto held a luncheon in honour of Mental Health Week. In the words of the president, Kathy Mochnacki, “This event featured a panel consisting of a psychologist, psychiatrist and a social worker/art therapist and the goal was to give families information about schizophrenia and psychotic illness. Our panel was stellar with psychologist, Dr. Lori Triano (president of the Schizophrenia Society of Canada), psychiatrist, Dr. David Dawson and Certified Art Therapist/Social Worker, Joanna Cheung from Markham Stouffville Hospital’s mental health system. Our local MP Majid Jowhari (member of Parliament in Ottawa) was there as were Richmond Hill Councillors, Karen Cilevitz, Godwin Chan, and Tom Muench from our municipal council, the York Regional Police,” and various mental health agencies.
Both David and I have spoken to this organization on a number of occasions and David commented to me after that the families just could not get enough information.
Talking to Kathy after, I was surprised to discover that most if not all the families received nothing like the support my family has received over the years. I thought I would share what I think would be an ideal situation for a family learning that their loved one has schizophrenia, bipolar or some serious mental illness.
When the person is diagnosed and that is usually in a hospital setting, the family should be told in a meeting with the staff who have cared for and diagnosed the person. You should be given information about the condition, an idea of treatments, prognosis, and what to expect down the road. You should also be provided with resources like books, pamphlets, courses and whatever might be of value. We got most of this.
Discharge should involve housing if that is needed and referrals for follow up care to doctors and agencies that will continue with the care and the road back to what may be a new normal. Of course families should be involved with the follow up care. In my family’s case, appointments not only initially involved the psychiatrist but a nurse educator and referral to an excellent program called Family Education and Training.
I am not sure if that still runs but there are considerable resources for families at my local hospital. This is a link to those In addition to a library, there are programs such as family peer support.
Families should always be involved on any ongoing care and treatment unless there are unique circumstances that prevent that. We have almost always been involved and able to talk to doctors or others. There was one time during a crisis where this did not happen and the result almost led to a very disastrous outcome. Fortunately, this was overcome much to everyone’s surprise and relief.
The doctor and the staff whose stupidity caused that problem were all reprimanded by the hospital and I was told that the incident was recorded on their personnel file.
The young psychiatrist who was left to pick up the pieces and put them back as well (along with a young social worker) said that there are better outcomes when families are involved. He also added that he has many patients with no family involvement and that makes recovery far more difficult.
What I have described here are things that those with problems like cancer, diabetes, MS, and on and on mostly already receive now. There is no reason that psychiatric illnesses do not get those too. I can only suggest that all of you make those demands of your health care providers and be as insistent as you have to be. Don’t be afraid to threaten legal action or of notifying the press. Never worry about what they may think of you but just do all you can to make them do the right thing. What do you care if they may not like you and not want to go have a coffee with you.
While I may be painting my own local hospital in a favourable light, it gets there partly because they get pressure from the community. A few years ago, one of the doctors leaked that there were plans to move a satellite unit servicing an area with limited resources to the main hospital. I wrote about it and others complained and the unit is still there today.
In April this year, three psychiatrists quit the local psychiatric ER and the medical school pulled their residents out. Four days later, the hospital announced major changes. The safety problems were pointed out to the hospital a few years ago but suddenly, they had a solution.
As the result of the overcrowding at the ER, Arthur Gallant was made to sit in the general waiting area, hands cuffed behind his back with a police officer on either side of him, He is suing the hospital for $25,000. I’ve corresponded with Mr Gallant over the years as he used to write a regular blog on mental illness for Huffington Post. Arthur was 1 of 5 Canadians named as a Face of Mental Illness by the Canadian Alliance on Mental Illness and Mental Health which is an initiative of Bell Let’s Talk. Arthur has been featured several times on TVO’s The Agenda with Steve Paikin and in The Toronto Star, CBC’s The National , CTV News Channel, The Globe and Mail, CHCH’s Square Off, and an educational video for the Canadian Mental Health Association (Ontario Chapter).
And I should mention that he was a member of an Ontario Government advisory panel on mental health.
If you want improvements, fight for them!
An Addendum by Kathy Mochnacki MSW RSW of Home on the Hill
I did attempt recently to have coffee with the President of the Board of an organization which appears to be positioning itself as being an example of “evidenced based community treatment” for mental illnesses. I had hoped to make him aware of the 50% of people with schizophrenia and the 40% of people with bipolar who have the symptom of “anosognosia” and therefore lack insight and cannot access the voluntary services of his agency. There needs to be the political will to find innovative ways to help these individuals.
Perhaps there would be fewer homeless mentally ill people if his agency was a little more flexible. I was not upset that he did not have coffee with me, but very concerned. as a family caregiver and a taxpayer, that he and his Board are responsible for allocating millions of our tax dollars to his agency’s programs yet he does not appear to be interested in learning about the symptoms of these horrendous illnesses.
I later met with my MP, Majid Jowhari, who has arranged for Home on the Hill to have input into his mental health platform for the upcoming federal election. We will be asking that there be more awareness of the symptoms of mental illness among mental health service providers and more effective mechanisms of accountability.
This short video (17 minutes) is of the Q and A with answers on how drugs work, dealing with lack of insight and cognitive remediation ( “Video by Billy Dennis”)